Mast Cell Madness

Another Specialist to See

Saw Dr. Calm today.  I explained the IVP situation with Dr. Pepper and Dr. Calm agreed that I should not have an IVP, that it could be life threatening.  I just had an anaphylactic reaction a few weeks ago over two pieces of cashew, and I have a pretty good crop of hives, so premedication for me is sorta like a drop of water in a desert, doesn't get much done.

Dr. Calm reordered a bunch of tests to check for mastocytosis.  He also ordered a cashew antibody test to see if I am really allergic to cashews or if that was just my body's way to say ENOUGH.  He also is sending me to a dermatologist to be checked for mastocytosis problems of the skin (maybe my big winny fat nose hive?? or the brown and red spots scattered all over my back..).  He asked why I hadn't seen one before and I said it is because there is generally a year wait for a dermatologist in this town.  A gal I work with had recurrent skin cancer and the local dermo's office told her it would be three months before she could see him since she would be a new patient.  I don't know what mojo Dr. Calm worked but I had a call from the dermo's office and have an appointment early Monday morning.  WooHoo!

Dr. Calm thinks I need to get my hiving under control, as that may be why I reacted to the cashews.  So now I am on 50 mg atarax at night (H1 blocker), 10 mg singulair (leukotriene blocker),  2 doses of Zantac per day (H2 blocker), if I can tolerate it 2 doses of Zyrtec per day (H1 blocker) plus take gastrocrom again (mast cell inhibiter).

During the cashew episode I started having a really bad reaction about 20 minutes after I ate two cashews.  I started hiving big time, I felt faint and dizzy (my blood pressure dropping), nauseated, in severe abdominal pain, and then the agioedema started in the throat and the allergic asthma.  I self treated with 50 mg benedryl and 25 mg phenergan.  I should have used the epipens, and Dr. Calm agrees with that assessment.  He says never hesitate to use the epipens, but I cringe because they certainly hurt!!!

Hoping for a productive weekend.  Hope you all are having a good weekend also!

Kidney Rocks

Passing Stones = Wishing You Passed Out

I know today what I did not know yesterday:  My terrible stomach (and I thought pancreas) spasms were due to a kidney stone making its escape from my left kidney.  This explains why two syringe fulls of fentanyl  at the ER yesterday morning didn't seem to do anything much for my pain..plus why my blood pressure was at 162/110!

I last passed kidney stones about a year and a half ago - there were three of them.  I know from the CT scan I had yesterday that I have a kidney stone in my right kidney.  Since I got rid of all my stones in 2009 this must be a new stone.  I suspicion that my left kidney HAD a stone, probably a small or sandy stone, that was not detectable by CT scan.

Besides the "colicky" pain, the clue I had today was (its icky) lots of blood in my urine.  I was prescribed an antibiotic yesterday by the ER doc.  I was offered prescriptions for heavy duty pain killers, but I already have plenty of those on hand.  I was angry at my body so just went to work after getting out of the ER and toughed out the pain.  This was not easy to do, as the pain was god awfully godawful.  Today I am still in pain but it goes in spells.  I fear that the stone in my right kidney will decide to take a sled ride down to my bladder too. 

The Headache is not happy tonight.  The pain is very bad.  I think my pain cup is way overfull.  I am hiving everywhere and itchy.  I am not sure if the hives are from the kidney stone pain (yes I sometimes hive if I am in tons of pain!) or the neurontin or the antibiotic. Itchy Itchy Itchy!  I have taken benedryl so maybe it will get better soon.

Neurontin Day 6 & 7

Yesterday was Day 6 of taking neurontin and today is Day 7.  I am dizzy and have a hard time setting still since taking tonight's dose.  The diarrhea (a second icky thing) is much worse.  I still have fairly significant leg and pelvic pain, but it has faded in comparison to the kidney stone pain!!!  Guess that's a plus for the kidney stone.

This maybe TMI for most of you but I have a compromised anal sphincter from fibrotic changes from radiation.  I already have chronic diarrhea and quick motility for the same reason.  So neurontin seems to have increased both the number of stools and how quickly I have to hit the bathroom.  Yesterday I had two "accidents" and I am up to four tonight.  I simply cannot hold back the stool before I can get to the bathroom.  And today I have had zero, nada, zilch to eat - just liquids because of the abdominal pain - so right now it seems to be - urge, get up walk three steps, uh oh bad news, try to get to the bathroom to clean up.  I have adult diapers or as one of my friends insists - disposable briefs - and may need to break these out if this keeps up. Incontinence pads are just not sufficient.  I generally regulate this by going to the bathroom on a schedule but neurontin just doesn't care!!!  :(

I see Dr. Kildare tomorrow, so I guess I will see what he has to say.  [Keep an open mind Winny!]  It's going to be another long night!  One of these nights I will have a regular night's sleep.

Working Towards Better Attitude

Neurontin Day 2

Galatians 5:11
...the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness
Bible, New International Version (©1984)

Trying today to focus on positive aspects of my life.  I need to reach down deep and start moving forward again.  I really feel like I am on a treadmill - running and running but getting nowhere fast.  I have the scripture above hanging on the wall of my office where I can glance at it throughout the day.  I remind myself that I need to be patient and kind, steadfast and faithful in my dealings with customers and with my coworkers and family. 

Day 2 Neurontin

The leg pain has been flucutaing throughout the day, sometimes not bad, sometimes horrendous.  I have had to do the dance of pain several times today.  The pelvic pain is a little improved, but remains excruciatingly present.  The neurontin has increased the diarrhea and nausea is constant.  I am dizzy and having trouble focusing my eyes.  The burning is almost gone in my feet, but the sharp stabbing pains persist.  I am having new pain in The Belly and pray it is not pancreatitis again.  I am sleepy but I can't fall asleep.

Having hives again this evening, not as bad as yesterday.  Am going to bed in a few minutes. I feel really brain damaged this evening, suspect it is the medication, so I hope what I have written is comprehensable. I will try to sleep it off tonight   Hoping you all have pain free days and restful nights.

Neuropathic Pain

Hopping Legs & Hives??

I have gotten through the week without any pain meds or muscle relaxers so far. Each day I drive into work the leg pain increases.  Today I carried a few trays of veggies and fruit for the office Christmas party from my car into the office, and then took a couple of the empty (but heavy) trays back home tonight.  I don't know if I am just having trouble tonight because it is cumulative pain, or the weight of the tray (which might have been between five and ten pounds heavy) was enough extra to push me over the edge.

Last night I spent the night tossing and turning with my legs cramping and pulling.  I had nightmares about trying to climb stairs or deciding to take an elevator, and then sitting in a doctor's waiting room swinging my legs while I sit in office chairs too high off the floor for me.

I have jiggling, cramping, burning, tinging, numb, and malfunctioning legs tonight.  As the pain increases my nausea has been increasing also. The bottoms of my feet and the arches are cramping and on fire.  I feel like hot needles about six inches long are being stuck in my heels.

It's now almost 1 AM and I have been trying to outlast this since about 9:30 PM.  I think I am going to have to break into my medication.  I have had only a few hours sleep since Saturday because of the pain.  My PCP says not sleeping makes the pain worse, so I am sure that is a contributing factor.  

My knees for some reason are burning and itching too, they actually feel hot to the touch, as do the palms of my hands.  Sometimes I feel this way before I start getting hives or angioedema.  But I have been a good girl all day, and have not eaten any mammalian meats even though I was sorely tempted by something called "Settler's Beans" a gentleman at work brings every year.  It has ground beef and bacon in it so I resisted, but it was very hard to do.

I can feel hives popping out on my face so I guess I must be having an allergic reaction or mast cell degranulation.  Sometimes if I let pain get out of control I will just start hiving all over.  I think my body just doesn't like pain very much.  I think it just needs to get used to the new "normal" and move on!!!  No more drama!!!  According to what I have read about mast cell activation disorders trauma can start mast cell degranulation.  Just what I don't need tonight.

On the plus side I finished a programming task for a client today even with my brain full of cobwebs.  I felt like I actually accomplished something!  Just trying to make it until tomorrow.

I'm not feeling too well right now, as my face is starting to swell up a bit.  Maybe that is why I am having nausea and stomach pain.  Going to medicate with antihistamines as I am feeling more than a little light headed.  Just what I don't need right now. Hrmph!

Polka Dot Winny

Ready For A New Week

I have been on a downward roll lately.   I hope that I have reached the nadir of my bell curve and am hopefully starting the long climb upwards again.  I am going to see the neuro practice tomorrow and then try to go back to work tomorrow afternoon.  The sun will be shining, the weather will be great, and my body will be cooperative!

Tonight I am hiving, polka dotted all over.  I don't know how many of you have hives, but sometimes they actually hurt and sting before they pop out.  Today has been one of those days.  Almost like being bitten by ants here and there, but there aren't any ants.  I did eat some animal protein today, but it was a piece of turkey bologna chopped up with some pickles to make a low fat mixture I put in a sandwich.  No mammalian meat, so I can't blame the polka dots on that!  I don't think the cyclosporine I am taking is doing the job.  I have another appointment with Dr. Calm the week after Christmas but not sure if the spots can wait that long before instigating another anaphylactic episode for a non-mammalian meat reason!  I  will anti-histamine up this evening and see what is left of my spots tomorrow.  Maybe I need to stop all milk products???

The pain is constant now from The Legs and pelvic areas.  I am off any pain medication or muscle relaxers at the moment, having tapered myself off.  I have also been very careful not to aggravate my issues by doing much with The Legs the last two weeks.  My brothers even went grocery shopping for me!  So nice of them (especially in this cold!).  I'll see what NP for Dr. Kildare the neuro says tomorrow.  I can't do Cymbalta or Lyrica (Cymbalta think Rocky Balboa sweating during a heavyweight bout, Lyrica think Linda Blair in the Exorcist) and have not tolerated neurontin.  Elavil and that class of medication aggravate my myoclonus (apparently I was born with that) so I won't take these.  Not sure if there is anything much left for nerve pain in these classes.  Real pain medication I have the real issues of itchiness and hives, and the fact that The Headache really doesn't like it. Arrrrgh.

I simply just won't think about it now.  I'll think about it tomorrow. After all, Tomorrow Is Another Day!

Screaming Inside

End of a Bad Week

Not a great week this week.  Glad to be rid of it and moving on to next week. The Legs and The Belly and The Headache and The Hives have all decided to descend on me this week.   I have been medicating more than I like to, and since I impulsively deleted data during my last hiatus in medicated Hell I did not try to work at all this week.  Not happy at all!

I am having difficulty sitting still this evening between all my oooboos and my hives.  Doing the dance of pain while trying to avoid scratching too much.  I fear it is my pain medication which is making the scratching and the hiving increase.  Just ready to sit here and scream, but I am practicing serenity and calmness so I am just screaming silently.

Everywhere my clothing touches my body, every bend and joint and wrinkle, is scratchy itchy burning lumpy misery.  I've been worse but it still is not pleasant.  My pain is less because I am medicated, but it doesn't do much good if I replace the pain with jumping nerve wracking hives.  Worried because I am almost out of pain medication options and since this reaction seems to be increasing with each dose of pain medication I have taken I fear this med is going to be off my list of remedies permanently.

I'm going to take a second dose of prednisone to see if it helps this evening.  It may be why the jitters are worse, since prednisone makes me a worse insomniac than I am already.  Oh what a tangled web of chemicals I have woven for myself.  Argh!
I woke up grumpy and itchy and in pain.  Not my usual cheerful self.   Need to do an attitude adjustment tonight in my sleep and slough off all my negativity and get back to my sunshiney normal disposition.  But even the bottoms of my feet itch so I'm definitely whiney.  On the upside my Mom is getting back to her normal grumpy self which makes my heart happy. 

If Mom has the energy to gripe then she is feeling much better!  I told her we are going to both be old grumpy seniors that sit around and complain about all the young whippersnappers and their strange disrepectful ways.  That generally elicits a laugh from Mom!  We worked on a crossword puzzle together this evening, and Mom was better at it than me.  I'm going to blame my lack of performance on my medication, but really my 80 year old Mom is fantastic at crosswords!  Hope I am that sharp if I make it to 80.

I'm going to go and slather my lumps in something to reduce the itching and go to bed. 

Aargh!

Halloween In Michigan

Made it to Michigan.  The people here are sooooo nice!  I'm waiting between updates on the system to do my part and check data.  This will be a fairly long couple of days while my boss pulls in and converts data and I validate and test the data and then we balance to the client's old data.  I admire my boss because she does this time and time again, and has to write custom programs to pull data from a different system and make it make sense in our system.  The IT guys from the old system and the local IT dude (who is very very good) have been up working on this most of the night.  Now it is our turn!

I have two new epipens and some emergency prednisone, which I am to take at the first sign of more hives.  Dr. Calm told me to quit taking the higher dose of cyclosporine because my blood levels were too high.  I told him I didn't think it was quite doing the job and if I had a high blood level you would think it would have done better.  He is pretty sure that the severe stomach pain I had with this episode is just another part of systemic mastocytosis.  He said he might test me for hereditary angioedema  which the ER doc suggested, but my C4 levels were normal and they generally are high with that disease.

Dr. Calm also said we could test for "beef allergy" since basically the only food I had that day was a small hamburger (at a "safe" restaurant I had eaten at before) and I didn't even eat all of that.  He said if you have a beef allergy the allergic reaction might take a few hours to show up.   I don't eat a lot of beef (I have difficulty digesting protein because of The Belly) but it is something I eat consistently each week.  From an article I found ("The Baffling Bite of Beef Allergy" allergicliving.com) apparently I live in one of the few areas in the United States where a specific tick lives, and bites from that tick can trigger an immune response to beef.  Ewwww - tick bites!!  Ewww - ticks!  If this was the cause of my hiving problems I will be happy but grossed out.

I bought some food at the grocery store here to eat because I am going to have to be very careful about eating out.  I will faithfully take my epipens with me where ever I go.  I already can't eat seafood or fish, to the point that if I eat something that was cross contaminated with fish/shellfish protein I get very bad hives.  Pork is almost impossible to digest, and nuts don't digest at all.  Beef is the last protein I have to eat, and I am praying I am not allergic to it.

I am covered with red hives and I am so tired I can't hardly go.  I feel very sick, but I'm glad I was able to get to Michigan!  I at least have that much command over my body - a small triumph but a triumph none the less. I am sure my team could have converted without me here (I have no allusions of indespensability) but it would have been harder on them, PLUS the clients were expecting me to help with the billing and collections piece of the install.  They are such nice folks I didn't want to disappoint. I am just aggravated about my body not behaving at the last minute like that - not sure what I can do about it.  I am running out of things that actually work!  I have an appointment with Dr. Calm when I get back to Missouri, so maybe I can get some answers after more testing.

Will be working tomorrow on Halloween.  I didn't bring a pirate costume, though I wish I had because I like to say "Aargh me matey" but I do have a cute sparkley pumpkin shirt to wear.  I have great hopes I will be able to help get the client started entering visits in our system as the data I have been checking off and on while I type this has all been perfect.  My boss does a fantastic job with a really hard task!!

By the way, they said "hoot" a lot here, like "don't give a hoot",  which is almost as good as saying "Aargh me matey".   They said this area is known as the thumb of Michigan. The weather is clear but nippy.  It is beautiful here and the motel we are staying at is a "hoot" too!

Winny Big Face

Epipens to The Rescue!

Today has been one of those days you have nightmares about.  You know the ones, where you have to go somewhere, but somehow you never get there and everything that can happen does.

I changed to cyclosporine to try to get better control of my hives.  I not only have hives but I can have life threatening angioedema, anaphylactic shock, and allergic asthma.  I had gone over a year without any real anaphylactic reactions, but I guess the change over in meds is not doing the trick.  The odds caught up with me in the afternoon.

I was hurrying around today. I had to vote at the courthouse because I won't be here election day. I had to take my brother to physical therapy. I needed to finish up packing my extra large suitcase (for 16 days away from home). I had to pick up my mother's medication and my thyroid medication refill. I had to get a blood test done early in the morning for Dr. Calm, the immunologist. I had to go to a Wal-Mart pharmacy in another town to get a new prescription for the altered dose of cyclosporine.  I had to coordinate the new prescription with Dr. Calm's office because they needed to see the test results before prescribing.  Somewhere in the chaos I lost my buzzer controller for The Headache. I needed to get a haircut and buy travel shampoo.  I had some laundry to finish.  I needed to be at work for a couple of hours to get ready for the trip.

When I finally got home at 4:00, I wasn't feeling too well.  My sweet sister brother and Mom helped me look for the missing buzzer controller because by now The Headache was deciding it didn't like doing all that stuff (which was not complete - I didn't have the new prescription for cyclosporine, or have my hair cut yet, or have my baggage packed, my laundry finished, or travel shampoo bought.)  I finally found the black little holder in my car UNDER the driver's seat.  Not quite sure how it got there, but today anything was possible. 

By 4:20 I had put a load of laundry in the washing machine, and sat down to see if I would feel better, because I was feeling sick at my stomach.  Pain started coming over me in waves - right in the stomach.  The pain was bad as I have had with pancreatitis.  I thought it might be pancreatitis.  I was determined to tough it out with no pain killers because it would interfere with the rest of my day, and I didn't have the time to be sick.  My sister thought I should go to the emergency room, but I told her no I think I can do this - I'll see if I can wait this pain out. My sister went home - but told me to call her if I needed a ride to the ER!

The pain continued for the 20 minutes, excruticating cramping burning boring pain.  At 4:40 my face was tingling and so were my hands.  My lips starting feeling numb, and all of a sudden my nose closed shut.  I looked in a mirror and my face was bright red and it was starting to swell.   As I went back down the hallway to the living room I started to feel faint to the point I felt I was going to fall.  I knew what this was - my blood pressure had dropped which meant my body was redistributing fluids away from my brain.  Anaphylaxis is the cause of this - blood and fluid rush to the areas with angioedema - my face, my hands and my feet.

Things started progressing rapidly.  I call my sister hoping she had made it home.  She was, and said it would take her about 15 minutes to get to my house to take me to the ER.  It would take an ambulance 20 minutes or more to get to my house so her transportion was quicker. 

After I hung up my hands turned bright red, and started swelling.  The swelling started up both arms and was halfway to the elbow.  My face was bad - puffy and BIG: big nose, big cheeks, big ears, big lips.  My big lips actually looked blue.  I felt the angioedema hit my vocal chords and then the allergic asthma wheezing started.  The stomach pain was terrible.

The wheezing got worse, so I decided to get my epipens out to see what can be done.  The advice of my Kansas City immunologist was never double guess this situation, always use the epipen - this is what they are designed for.  I carry two because of the speed and severity of my anaphylactic reactions makes one epipen insufficient.  I stuck one into my right thigh as I wheezed and wheezed, waited 10 seconds, pulled the epipen out.  Whew!  That needle was long and that needle hurt!  I  waited to see if my wheezing would go away, or the redness would disappear.  No luck, I hit my leg with epipen #2.   The shaking which was mild after epipen 1 got really strong with epipen 2 added to the mix. 

If this didn't help, it was 911 time but I really wanted to avoid that.  In my neighborhood out in the country they miss your road, they go too far, especially since Google maps has my house about a mile further down the road which is an empty pasture.  Just getting them TO your house is almost impossible even when you tell the dispatcher that they can't rely on interactive driving directions.

The wheezing subsided so the epipens had done the trick. I was glad I didn't have the added anxiety of trying to flag down an ambulance as it whizzed by the house. As my vocal chords and lungs started to get better, I took 50 mg of benedryl to hopefully calm down my hives, as they had started to pop up and the redness was extending over my entire body.  Then shaking got worse as the epinephrine spread to my extremities: good news!  The stomach pain which had been unbrearable also lessened, which to me says it was part of the reaction.  (Dr. Calm said that abdominal pain is a sign of possible systemic mastocytosis but for me the jury is still out on that diagnosis.)

At 5:00 pm my sister swung in the driveway.  I gathered my ID's, my purse, and cell phone and hopped in.  I was very nauseous, and had taken a zofran to help with the nausea but she was very kind and drove very slowly the 15 miles to the hospital.  My shakiness made it very hard to get in her van, and to get out at the emergency room.  Even driving slowly and waiting for a train at a railray crossing, we got to the ER at 5:20.  I told the clerk that I was having an allergic reaction and had already used 2 epipens.  They got me right back into a room - my sister said I was a sight - the overall red color of my face had turned into red and white stripes with my eyes looking out of big white circles.  My lips had returned to almost normal and my nose was back to where it should be breathing wise.

I tell my story to the staff as they try to get an IV kit in my veins.  They get one in first try, but it blew.  They start a second one, and it's a bit painful and leaky but it was getting something in my veins.  The ER doc came in, actually knew about mast cell disorders and thought I might have heriditary angioedema - I didn't even know there was such a beast.  Everyone marveled at my redness and where the redness was subsiding the welts.  A little different presentation from the norm I was told.  I was very very very shakey by now, and it was around 6:15.  My medical history is difficult to tell at best of times, but when your teeth are chattering it is hard to communicate pancreatic billiary sphincterotomy to someone.

The doc ordered solu-medrol, zantac, and 25 mg benedryl with IV fluids.  After about another 15 minutes these seem to be putting the stop to the hives, although I started getting a big hive right below the IV site.  Hoping like heck I'm not getting sensitive to saline flushes!! Many of the other hives fade a bit, but don't go away.   The lab tech can't get a vein for some blood tests for amylase and lipase after two tries, so she just takes a large lancet device and cuts a gash in the end of my finger and drips that into a very small tube.  First time I've had that blood collection technique used!

My sister in the meantime rushes to Wal-Mart since I will be on fluids waiting for the lab tests to get back, and Wal-Mart pharmacy (the closest pharmacy that carries cyclosporine) closes at 7:00 pm, and I HAVE to get the new prescription or I will not have enough at that dosage for 15 days.  She gets there and the pharmacists says Dr. Calm's office had called the prescription in at 2:30, BUT Dr. Calm's office called back at about 5:00 (when I was enroute to the ER) to say after reviewing my blood tests, the increase would not be needed, and I am to call them first thing in the morning.  I can't get a refill of the other script because it is not time yet for that according to my health insurer.  Augh!!!!!

In the meantime back in the ER,  I'm glad to find out my amylase and lipase are both on the low side.  This is good news because a few weeks ago my lipase was on the high side and perhaps a touch over normal.  At 7:30 the IV is stopped and the iv lines removed, and I get to go home.  My discharge nurse also has chronic hives, with a more classic presentation of clearly defined lumps on her arms.

The ER doc wanted to give me medrol pills also, but I said since I have to call Dr. Calm in the morning anyway I'll see what he says.  The ER doc also says I need to watch the hives tonight since they may rebound from the medications.  I understood, because the second day of this type of reaction is often worse than the first day.  My hives have been popping up everywhere for the last hour or so. I fear I will be having a miserable day traveling.

I am a bit worried about traveling because I don't want to have this type of reaction on a plane!  It can be dangerous for me to eat out when these hit, and I will be 15 days with eating out my main food option.  I guess I just must like living dangerously - on the edge!  I am still working on packing and laundry. I never got my hair cut OR bought shampoo.  Maybe I can find some hair care product somewhere that makes my witch hair better at the airport.  I have a layover in Atlanta - maybe I can get my haircut at the airport?

Will see what tomorrow brings.  I am so disappointed that I ended up in ER one more time!  I am also disappointed that illness has once again tried to derail me from my appointed rounds.  I definitely want to make sure I have an epipen with me at all times on this trip. 

This is an awfully wordy blow by blow account, but I think I am still pumped by all that epinephrine!!!

Winny Big Nose

My Giant Hive Revives

I have a giant hive on the end of my nose..or a giant something.  The plaquenil I took for chronic hives actually made is get smaller and even fade a bit so all that was left seemed to be a crop circle of freckles.  I could handle that.

Since going off the plaquenil and starting cyclosporine The Nose has started to puff up and get ouchy.  Not sure if this is due to going off the plaquenil or just because the cyclosporine doesn't have The Hives under control yet.  There is an animal disease called swine erysipelas that makes the pig's nose sore and turn up.  Maybe if the crop circle keeps growing I will end up with a cute upturned nose instead of the droopy schnozzle I have now.

I feel like Rudolph the Red Nosed Reindeer, but I am sure my nose is not as bright and puffy and shiney as I feel it is.  I am just self conscious about it because #1) it ITCHES #2) it's PUFFY and #3) my nose is big enough already without any help from the crop circle.

I increased the cyclosporine dramatically today per Dr. Calm.  Thursday morning I go get a cyclosporine "trough" blood test done.  First a pig nose, now I'm going in for a trough.  Doesn't bode well does it??  I guess it is just a spot check to see if my kidneys and internal organs are behaving themselves.  If the cankles get worse then I'll know the cyclosporine makes your nose glow and your ankles grow!!!

My leg and pelvic pain is with me this evening, but doing better.  The Belly is not happy but The Headache is just cruisin' along.  I'm debating not feeding The Belly to make it calm down, but I get pretty shakey anymore if I skip too many meals. 

Trying to get everything in gear so I can go and do my magic at the clients.  If my nose keeps up I'll be able to my magic in the dark by the light of my nose!!!  This may start to make sleep even more difficult than it is already - but maybe it can serve as one of those itty bitty book lites and I can read in bed easily.

I guess I'm like Rudolph, and belong on the island of misfits with my bulbous red nose.  But I have to say, with my dental phobia, I'm not sure if I would team up with a [gulp] dentist!!!

IV Practice Pincushion

No Fluids For Me

Have been feeling ill all week.  Just thought it might be the new medication (cyclosporine) or quitting an old medication (plaquenil) or maybe fatigue (because I have been working some longer hours).  Started being nauseous on Wednesday, very nauseous on Thursday (to the point of quitting eating), and thowing up at work Friday and leaving early.  I tried to make it out of town but got sick again a couple of times, and decided I'd better go to urgent care.


I was able to be seen at urgent care right away, and they decided I truly am dehydrated, with orthostatic hypotension and elevated heart rate.  I told them I think I have a UTI but I can't tell because the radiation therapy messed up my nerves so the pain shows up in the wrong places or doesn't show up at all.  I also said it could be pancreatitis but it didn't feel painful enough.  The doctor ordered an IV and zofran in the IV for hydration and nausea control and some blood tests.  Then the circus started.

I am not easy anymore to "stick" for blood or IV's - and I am worse when I am dehydrated.  I know I need IV hydration BUT it is an ordeal to get a vein just to take blood for a blood test, and when they try to thread an IV it is impossible! 

The first nurse tried my right hand - I told her go for it.  She failed after partially threading an IV and blowing the vein (she was a beginner at putting in IV's so incorrectly blamed herself) and called in a second nurse.  That nurse looked over my arms.  I tell them the last time they used a pediatric IV set to start an IV.  I am ignored.  The nurse pokes my left arm and digs, no go on that vein.  Tries another vein on the left arm - gets blood enough for the blood tests (barely) and then tries to thread an IV.  Blown vein again.  Sigh.  Tries a third vein on the right arm this time, it disappears as she approaches it with a needle.  A fourth try in my right wrist that is extremely ouchy but dry hole.  Calls the parenteral nurse with the ultrasound machine.  I tell them - ultrasound techs couldn't do it last time, it was a pediatric IV set that did the trick. 

A third nurse who comes in and looks at my arms decides to get one of the pediatric nurses in to see if she can get an IV started because I am a small person with small veins.  I didn't have to tell her about the pediatric IV set.  The fourth pediatric nurse comes in, looks at my arms, said she probably could get a pediatric IV set started in my left arm BUT the parenteral nurse appears with her ultrasound machine and long long needles so the pediatric nurse does a fade while the fifth nurse tries to get an IV started. 

The fifth nurse tries three times on my left arm and twice on my right arm to get a vein to start an IV- some very deep.  As soon as she would get close to a vein it would disappear.  She got one partially started and tried to "float" it in and blew that vein.  Very interesting - she showed me the difference between veins and arteries on the ultrasound.  Very painful - at this point it is 10 unsuccessfull tries to get an IV in and over an hour of being messed with.  I told the ultrasound nurse I could have had antinausea medication and sucked down 3 liters of water by then, even if I barfed some of it back up!   She gets the hint and goes off to tell the doctor they can't get an IV started. 

I was shaking and my teeth were chattering - I think it was just too much digging around for me.  I can handle about 7 sticks and after that I get really shakey.  It is worse when I am dehydrated to begin with. Big Sigh.

The doctor comes in and says well you won't be able to get any IV fluids today even though you are dehydrated, unless I wanted them to go for the neck veins which he could order. Nope I said - had that tried before as bad as the other veins.  THEN he says - next time you are dehydrated go to the ER don't come to urgent care - they are better equipped to handle someone like you.  He said I appeared to have a UTI and he would prescribe Zofran and an antibiotic.  Boy they were really glad to see me out after that!

I now feel like I flunked Urgent Care.  Kicked out of class for being unruly. I'm in the "somebody like you" remedial course.  Poor nurses all felt bad because of my bad veins.  I felt bad because they had to try to poke my bad veins.  Not sure why my veins are bad and getting worse.  What is more, I started hiving in the arms they kept constricting with tourniquets and poking, and then my face started breaking out in long hives. My face is still swollen and I still have hives on my cheeks, but at least the Zofran has enabled me to keep liquids down and take my antibiotics.  I am more Rene Zellweger tonight than Angelie Jolie because I have puffy cheeks instead of puffy lips.

I am some better today (after a day of antibiotics) but the nausea is still pretty bad.  The Headache was not so good yesterday or today, but I think the dehydration is part of the problem.  Hoping tomorrow will be better!

Saw the A-team this week for a three month checkup on The Headache.  No new recommendations (yeah!) but Dr. Hannibal Smith suggested I see Dr. Jock Biodude again for further biofeedback training.  Told to practice my biofeedback on planes, because I reported issues flying.  I am not a nervous flyer - I spend most of my flight time sleeping.  I think the problem has more to do with carting luggage, getting through security (have to have a manual pat down because of the stimulator), and hurrying to catch a flight, and perhaps a pressurized cabin than any anxiety I might have.  I am sure Dr. Jock Biodude would say otherwise - I must have a deep seated desire to be ill and puke in a stinky airplane bathroom and biofeedback will stop it.

I guess Dr. Jock Biodude needs to make a living somehow but I am not sure if I will make an appointment with him or not.  I missed the last one because I forgot when traveling for work.  I think it was a subconscious desire not to have to sit and hear sports analogies for an hour.  I will have to check my insurance policy - I am not sure if it covers biofeedback, so its a convenient excuse for avoiding further sports talk annoyance.  Three strikes - yyyyooooouu're OUT!

Dreamtime in Missouri

Productive Sleep

I have started dreaming again.  I had not realized I was not dreaming until I started again.  I am sure I stopped because I did not have enough thyroid hormone.  Dreaming is one way I know I am getting restful sleep (when I actually sleep).  With hypothyroidism you may sleep for hours, yet wake and not feel rested.  T4 replacement therapy fixes this somehow.  With The Headache and hypothyroidism, I get to sleep for a couple of hours, and not feel rested.  Sigh.

I remember how tired I was when I was first diagnosed with thyroid deficiency.  I knew the thyroid medication was working because I started dreaming again. It had been a long long time since I had had a dream I remembered.  I also woke up from sleep feeling refreshed, like I had been breathing buckets of cold fresh mountain air after thyroid hormone replacement.  Restful, wonderful sleep!  I love it!  I miss it!!!

The dream I had last night stuck with me.  I was driving in the mountains in the dark next to a river that was mirroring the mountain road - going up and down hills.  I could hear the rushing water in the darkness and saw the dark blue gleam of the moon off the current.  I parked my vehicle in a warm yellow cave where the river ended, and next I knew I was flying along a road that was surrounded by tall buildings and waterfalls.  So many waterfalls - everywhere I looked there were beautiful clear blue waterfalls.  Somehow I knew the river fed the city of waterfalls.  Like the river, the sound of the waterfalls filled the air, and the water hugged hills and valleys in a way that defied gravity.  Near one glass towering building a pyramid of waterfalls was topped by a hovering revolving orb of water.  The road kept going on and on and on and the waterfalls sparkled and fizzed and burbled with new structures and new waterfalls every so many blocks. As I flew from the darkness into sunlight sparkling off dancing waters I woke up happy and relaxed.  Ahhhhh.

I started taking cyclosporine today.  I am to stay at my initial low dose for a couple of weeks, but may have to increase the dosage.    Dr. Calm gave me a prescription for it last Thursday. My face has been swollen the last couple of days from mild angioedema, hoping this will fix my fat lippitis.  I used ice last week to bring the swelling down before going to work, but that then starts issues with my facial pain from The Headache.  Wish I could disconnect an illness and put it on a back burner or maybe cure one disease before I start working on the next one.

The Hives Return

Itchy Itchy Itchy

The hives returned yesterday. Actually they never really leave, but they become less bothersome. Yesterday they decided to hop into high gear. Bumps everwhere my clothing touched, bumps all over my back, bumps on my face, bumps on my arms, bumps on my chest. Bumpity bump bump they were popping out everywhere. Very uncomfortable. My eyes are very scratchy too.

Taking a large assortment of antihistimines hoping to make this better, but they aren't working. The itchiness is a little less, but truthfully just thinking about the hives writing this is creating itchy spots everywhere. It feels like they are in my ears, in my nose, and my throat.

Guess I will have to call the immunologist Dr. Calm Monday. I have waited more than a week to see if the higher dose of thyroid medication would help. They were better for a few days, probably some carry over from the prednison, but have been getting worse each day. The more I itch the worse they get....

Having a hard time sitting still this evening. Antihistimines (especially the older ones like vistaril and benedryl) can cause you to move erratically. They certainly do that to me - its an uncontrollable urge to move.

Hoping everyone had a great weekend. Adios Amigos as the Cisco Kid would say! The Cisco Kid and Pancho were my favorite TV vaqueros growing up. I'll bet they never got hives even in the strong desert sun.

Facial Pain And The Headache

Working on A Pain Action Plan

I was told when the occipital stimulator was installed that there could be some "crosstalk" between the occipital nerve and the trigeminal nerve, the supraorbital nerve and my facial nerves.  These nerves do not touch the occipital nerve network, they sorta interweave their nerve networks with the ends of the occipital nerve network.  The idea was that as the occipital nerve received stimulation it could somehow influence (chemically?, electrically?) the other nerves and problems I have with facial pain could be improved.

Now that I have not had my electricity fix for a couple of days I realize that the facial pain had been reduced.  The pain on the left side of my face at present is at the "let me rip the nerves out with a pair of pliers - it couldn't hurt worse" stage.  I'm also noticing my left eye is turning in at times - I'm sure this is a side effect from the burning nerve pain that bisects my entire face beginning at midline and extending back to my left ear and ending under my chin.  I think of those cliche German officers in the old WWII movies who have saber cut diagonally over their eyes and down their cheeks: I feel like there is a big saber cut running down my face too.   I guess it will go well with my Ms. Peanut monicle.

I am not feeling very with it today, but yesterday wasn't too bad - so one good day out of four! Yeah!!!  Trying to figure out pain management vs. driving tomorrow because I will need to go get the controller and reprogram my new one.  To medicate or not medicate - that is the question.  To drive or not to drive is the next decision.  Big Sigh.

I was looking up allodynia (which is an exaggerated pain response to normal stimulus) and stumbled upon a link from the National Institute of Health (NIH) to a site called PainAction.  I have signed up, and I'm going to see if I can formulate a pain control plan utilizing their tools.  There are four main sections:  Back Pain, Migraine Pain, Cancer Pain, and Neuropathic Pain.  I definitely have Neuropathic Pain, and I think some of the information under Migraine Pain will be of assistance with The Headache.  Too bad they don't have a section called Belly Pain!  Then it would be like the trifecta of pain websites! 

There is a pain tracking tool, and a section on self-help, and information on alternative therapies.  I have downloaded their pain management booklet, and am going to read up on chronic pain and how to manage it.  Hoping to get a few new tips that I can use in addition to my daily stretches and biofeedback.  I know I need to get back in physical therapy - it did help my endurance this summer as I was able to be on my feet longer without pain intervening.  Also the myofacial release decreased some of the sensitivity (allodynia) I have in the radiation fields where I received treatment, so physical therapy definitely is a winner in my world!!

The hives are dancing across my skin tonight, here, there, and everywhere.  They are bigger than they have been, and I fear I may be allergic to dilaudid, which I have been taking for The Headache when it is at its worst the last few days.  I will be extremely sorry if that is the case, as I will be almost completely out of pain medication options.   Plus I will be back to having the Big Lips.  My ears feel like they are swelling and are extremely itchy.  My digestion quit working earlier today, so The Belly is having its turn while all systems are out of operation.

I am having trouble sleeping between The Headache, The Belly, and The Hives.  The Legs are behaving which is a plus.  The weather has cooled to a nice fall temperature, and I have started the furnace because my mother (who will be 80 in another month or so) has a hard time staying warm.  I personally keep my bedroom at about 68 in the winter because since The Headache came along I can't sleep in a hot bedroom. 

Hoping this next week will be better than last.  I have things I need to get done at work, and did not plan to have a health crisis.  No repeats this next week.  Am predicting smoooooth sailing and a productive work week!  I want to be able to pull some long days, as I know exactly what I need to do - just getting it done is another matter.

Low Thyroid and Hives

I Need Patience

Spent the day today taking a relative to a "Parkinson's Clinic".  This is some clinic administrator's idea of how to market adjunct services to an already ill clientele.  If you weren't ill before you got there, you would be ill and exhausted after you escaped.  Got there at 8:00 in the morning and finally left at about 3:00 in the afternoon.  According to my relative a lot of time back in the warren of offices there was spent waiting on the doctor to appear.  They get you captive back in one of the little exam rooms and it becomes almost impossible to leave, and at a certain point you have so much time and effort invested in "sticking" it out to see the doctor you hate to just walk.  The supposed advantage was getting to see a social worker and a physical therapist at the same time as seeing the doctor, except there weren't any physical therapists there. Augggghh!!!

My blood tests have come saying I am not taking enough thyroid hormone (synthroid).  Since I have autoimmune thyroid disease and autoimmune hives, my hives are believed to be linked with thyroid dysfunction.  More circulating thyroid stimulating hormone (TSH) can mean more autoimmune activity, which in turns causes more hives....which may be why my hives have doubled since discontinuing the prednisone.  My TSH should be in a range of .5 to 3, and it was an 11 - meaning my pituitary glad is working overtime trying to jump start my thyroid. I am to give try a week on the new dosage and if the hives don't get better, I'm to go back to the immunologist.  Sigh.  I have been on a stable dose for the last two years, I guess my body has decided to go into attack mode again.  Why can't it attack something other than me??

I am itchy and grumpy and all of the seven dwarfs combined tonight.  Sitting in a waiting room was hard on The Legs today and The Belly hasn't been a happy camper for over a week.  I have hives bumped up all over me, my face is redder than normal, and I have the attention span of a gnat.  I actually feel sick enough I don't even want to think about work, and work is my only escape from feeling sick!!  Sigh again.

I am sooooo tired my thoughts are "echoing" in my head, ricocheting around my skull like a superball in a handball court.  I have tiny little red hives all over my forehead, in my hair, on my back, and on my legs.  I have even bigger hives on my stomach and my arms.  The Headache is not happy with me (too much walking I fear) so I am going to take many antihistimines and try to go to sleep.  Maybe I can sleep for years just like Sleeping Beauty.  You really have to be sleep deprived to wish that a witch with a poison apple would drop by for a visit!

A Hundred Miles Per Hour

Prednisone High

I'm a fast talker.  I grew up in Northwest Missouri and I guess we all had lots to say and little time to say it in. We were all fast talkers up there, you had to compete to be heard.  I now live in Southwest Missouri and they are more southern in accent and are slower talkers with softer voices.  Being a fast talker makes you seem pushy and agressive so I have learned over the last 20 years to pace myself.

On prednisone I seem to loose all control over verbal speed.  I am talking at 100 miles per hour, super animated, and then all of a sudden I crash and burn, drained of energy until my next day's dose. 

I have a Minnie Mouse annoying voice and depending on whether my angioedema affected my vocal cords too much I either drop down to a husky Marlene Dietrich range or accelerate to Spongebob Squarepants squeakiness.  Today I was definitely Spongebob.

I have trouble sleeping anyway and prednisone makes it even worse. Had an hour and a half of sleep last night, came home a little early from work because the energy all burned out of me at around 3:30.  Wasn't able to rest but at least the lip swelling and the sinus swelling have gone down.  My ears and behind the ears are still not completely angioedema free, but hopefully tomorrow's dose of prednisone will calm it down.  I'm still itchy but its much better than it was.  The Headache is not happy today, but that is right on schedule so I am hoping my antihistamine triatholon I will be doing tonight will help with the added ouchiness.

I am very very tired tonight (second day in a row with very little sleep!) so I am hoping the antihistimines will help send me to dream land.  I'm not so nervous about having my ability to breathe stopped while I am sleeping tonight.  I have gone to bed and woken up in the morning completely covered with hives, so I am always afraid the angioedema might get worse at night also with no way to wake up and use my epipens.  I get a little wheezy and it just ratchets up the old anxiety meter that prednisone gives me anyway.    My blood sugar is running high, but not too badly high, it should drop as I drop the dosage of predinsone.  Maybe if I take the cyclosporin it won't be as bad.

Tuesday I will be flying to Arizona and staying for a few days and I desparately want this episode of hives to be almost over if not completely over.  Eating out is pure misery  when you don't know what is going to start up The Hives, and to stay alert for the clients I can't take as many antihistimines as I really need to do.  Oh well.  Hoping maybe the icky gastrocrom will have kicked in by then!

Hoping everyone has a great Labor Day Weekend!  Hope some of you are actually planning to do something fun! FUN! "F is for Friends that do stuff together, U is for You and me, N is for Anywhere and Anytime at all Down here in the Deep Blue Sea"  Spongebob wisdom for us all, although I have been a bit Planktonish this week.

Winny Big Lips

Angioedema is Not My Friend

Went to my new immunologist Dr. Calm today to see about my hive outbreak.  He has reviewed my records and thinks I may be having a flare up of mastocytosis.  I told him that I have had intestinal biopsies and a tryptase level taken and they were all negative for mastocytosis, and he said that negative tests did not rule out mastocytosis, and that there wasn't any single test that could rule out mastocytosis - symptoms said more than tests decide the diagnosis unless you showed a definite postivie test. My continued allergic reactions and growing list of medication sensitivities (apparently muscle relaxants are a known issue for persons with mast cell disorders so no wonder I had problems) hives angioedema and the abdominal cramping I get with a bad hive "flare" are all symptoms.  Headache can be a symptom and multiple chemical sensitivity problems.

I got a bunch of blood tests done (ha ha - I was prepared and drank a lot of fluids before going there!!!) No problem with the blood draw although they had me marked to use a hypodermic and butterfly instead of the standard vacutainers so I guess they keep track of people like me who have trouble with blood draws - efficient for a change!!  I am on prednisone with a taper per my request because my hives tend to double back (get worse) if I don't taper prednisone. 

I am going back on Gastrocrom, a medication you drink four times a day with water - it is supposed to decrease the number of mast cells in your digestive system.  It's not very convenient to take because you have to carry these little plastic vials of liquid with you everywhere.  The pharmacy has to special order it, but I had some from the last refill I did about a year ago that should still be good (it's light sensitive so you keep it in a box of foil wrapped packages in a dark cabinet).   Dr. Calm said that it won't help my hives (it certainly didn't do that before) but it should help some of the belly pain.  Hoorah for that!  I have to take 8 vials per day, and its sorta flat salty tasting even diluted.  Guess its no worse than Gatorade!

The hives are some better tonight after prednisone although my angioedema (swelling of the lips, under the eyes, ears, inside the ears, my vocal chords, inside the nose, and it feels a little like my tongue at the moment, plus my feet and hands off and on) is worse.  It always is worse on day two - don't know why but when the hives starting popping back this morning inspite of my medication of the night before I knew I better get to Dr. Calm to get something to stop the progression.  I worked a couple of hours, but didn't get to stay as my face had started to swell.  I tried to skedaddle before the lips became Angelie Jolie lips. 

I was a bit upset this morning, not only because prednisone kills my stomach and pancreas, but because Dr. Calm wanted me back on the Gastrocrom which is a pain in the patootie and he wants me to consider taking cyclosporin, a heavier duty immune suppressant, to get things back in control.   I know the longer the hives stay flared up the more danger I have from anaphylactic reactions, which is truly life threatening, but more medication is not what you want to hear when you already have to travel with a handbag full of medication.

I go back in a month and maybe the blood tests will be the decider for me on the clyclosporin.  My blood sugar goes too high on prednisone, my body rebounds from it so maybe this will do the trick quickly.  Dr. Calm did say I probably should only take Botox for The Headache if I have a tiny tiny test dose first maybe in the upper arm to see what happens, and it would be no guarantee that I would not an allergic reaction.  I guess Dr. Hannibal Smith is going to have to take that off my possible treatment regimens, because kind of like The Headache I try very hard not to rile The Hives.

I'm traveling next week.  Praying that I will be able to stick it together for another week.  I would love to have a full month of good health and feel back to my normal level of work.  At least now I thank heaven my very very nice bosses have a trainer, and now a medical billing/coding specialist! If I fall by the wayside like the walking wounded I am I won't be leaving them in a bad place personnel wise.  I just need to hang on for a few more months and get the new guy (who is soooo organized and willing to learn!) trained,  then some of the sleepless nights where I worry about my employer I can worry about something else!  You know, if I didn't have supportive bosses and co-workers I would be SOL (or FUBAR as we said when I worked with military veterans).  This is a great advantage of working where I do, and the awful dilemma of having landed a job I love with people I enjoy but physically difficult for me to be well enough to work productively.  FUBAR indeed.

My boss, The Big Guy, turns 60 tomorrow. In my family not a lot of people live to hit 60 so I hope he can celebrate with happiness.  I'm gonna be dancing the happy dance if I make it - only nine more years to go!  At the rate I seem to be accumulating maladies I fear its going to be a tight race to the finish line for me.

I am including some links to discussions about mastocytosis by specialists, and how it is often missed as a possible diagnosis.  Most adults who are diagnosed with mastocytosis are middle aged by the time they get a diagnosis.  Maybe it is my causitive agent for everything - The Headache, The Belly, and The Hives.  I'm afraid The Legs can't be blamed on it.  Worried about the cost of additional meds.  Sigh and sigh again.

It Itches To Be Me

Urticarial Wheals Are Being Served

Woke up this morning feeling a little out of energy.  I went to bed last night earlier than usual and was awake and stirring earlier than usual.  There was quite the rainstorm going through the area, so I waited a little to start my commute to work.  I thought maybe the lack of energy was due to the storm.  The weather moving through the area had caused The Headache to poke and stab several times in the night. I had my daily 2 am jab to the temple to complement the other stabbing pains, but they all only lasted a few minutes so overall it was not too bad.  Stopping the Klonopin brought The Headache back into the almost manageable range again, so I was correct in thinking it was the medication.

Went to work, had to have my heater on in my office because I was way too cold.  Ate a fast food lunch which is an uncommon occurance since The Belly and I agree not to eat at work.  Eating makes the continence issues or lack thereof more of a problem, so I try to limit food and drink during working hours.  Didn't feel too well for most of the day, had taken zofran for nausea before lunch, and then was not feeling too hot after lunch - which I attributed to the amount of fat in my food : there was much more than the 5-6 grams of dietary fat I try to keep to with each meal, but it might have been the hives starting to act up.

I always have some hives somewhere on my body, have since 2007.  They almost disappear some days but in the evening they are always worse. I've been diagnosed with autoimmune chronic urticaria so I'm allergic to myself more than anything else.  Driving home I looked in the rear view mirror and noticed my forehead and face were getting bright red, and my ears and the inside of my nose were feeling mighty itchy.  This is not a good sign for me.  It means the hives are getting ready to pop out, the mast cells are gathering to degranulate, and I am going to have a miserable night trying to resist itching.

By the time I got home, I had gone from bright red all over to bright red hives.  Some are raised, and some are just red blotches of mast cells just under the surface of the skin.  I took a vistaryl tablet and waited to see if it would help.  Nada.  Nothing doing. Hives still popping, and now I can feel them behind my ears.  Not good news either, because hives behind my ears and soon I have sticking out ears like Mr. Rumbold on "Are You Being Served?"

I have now taken 25 mg hydroxyzine (Atarax/vistaril), 50 mg diphenhydramine (benedryl), 25 mg promethazine (phenergan), and 5 mg montelukast [Singulair] but I'm still broken out and still getting new hives.  They are not as large or as tightly grouped as they were so maybe this combo will slow things down.  I have epipens but really don't want to use them unless it is totally necessary.  The interior of my nose is a little swollen but I don't feel my vocal cords swelling so hoping I knocked the hives back enough that I won't need to use epinephrine.  I feel like I'm starting to get hives on the bottoms of my feet which is not great either.    I have ranitidine (zantac) which is an H2 blocker I can also take. Most of what I have taken have so far been H1 histamine blockers with the exception of Singulair which is a leukotriene inhibitor.  Generally the H2 blockers don't help me too much.

Wondering if the fast food restaurant cross contaminated my food with fish or seafood products.  I have to be extremely careful when eating out but most fast food places have good processes where either they warn you that cross contamination is possible or they just don't cross contaminate seafood/fish with other foods.  The inital help from the medication is already wearing off, and it's only been about an hour since I took it.  Gonna be a long itchy night at my house tonight!  Trying very hard not to be whiney but I itch so badly.  Waaaaah!

Where the West Commences

Traveling Underneath the Starry Skies

I am feeling much better this evening.  I had a very productive day at work, and hope to repeat it tomorrow and the next day.  I enjoy my work greatly, especially when I feel well enough to be there and to think.  Brain cloud beware, I am getting better! Disperse!

I am still very very tired but things are in much better control than last week. I foolishly quit taking the daily plaquenil for my hives after getting home from the last pancreatitis bout. The medication can be harsh on your stomach and can cause nausea, so I was trying to eliminate anything that might be making my pain and nausea worse. Now I am head to toe hives: I felt like finding a tree and scratching my back on it today, but took another vistaryl instead. I am taking the plaquenil again but it takes awhile to build up a blood level.

Will be traveling to a client next week, in the deep Southwestern United States.  Hoping I am up for the plane rides and trouping through the airports.  I am definitely checking my suitcase, but will carryon my boat anchor of a laptop.  It has some legacy software installed on it that I may need when I get to the client's.  Better to drag it with me, than need it and not have it.  I am sure I will find some use for it, if only to use the email to report back to the office.

I will be travelling with my full drug cabinet of medication, but am paring down the quantities - same number of bottles, but less pills to spill.  I ate some real food yesterday and today, hoping to be able to eat next week but I can always just go on with eating every third day.  I am not communicating my travel plans to any healthcare professional, as I am ignoring two different physician's advice and don't want to hear any flak about it.  They don't have to pay my bills: I do.  If there are any adverse consequences I will take the butt chewing later otherwise the less they know the better.

Liquids are staying down, and not only am I getting hydrated, but the cankles are threatening to return.  Oh the woe of cankles - I just know they will manifest themselves during flight time and refuse to disappear.  I get rid of them, and just when I don't want them - reappearo.

I'm going to make the legs behave even if they cankle up on me.  I am going to be a good girl and bring my cane and sensible shoes.  I am working to get The Belly in shape, and pray that The Headache will behave itself.  I haven't been to high desert climates since The Headache began, so hoping it actually will make The Headache feel better rather than make it worse!  The Belly really doesn't like to fly as I tend to dehydrate myself in order to control bathroom breaks, and dehydration makes it really ouchy.  I'll try to keep a little more fluid in my system than I have been when flying lately, so my hydraulics stay in better shape.  Cactus land here I come!

Cherry Jam Weekend

Luv My Cherry Trees

My cherry tree, which is 10 years old this year, finally had a crop of pie (tart) cherries that I could do something with.  In years past, I have been lucky to get a handfull of tiny little red cherries off it, but this year I have gotten almost two gallons of cherries from it!  I just love picking shiny red cherries and then cooking them up into rubilicious cherry jam!

Saturday almost all day I picked cherries.  My Mom, and Beanie and Augie helped pick, although the puppies mostly nosed around on the ground where we dropped a few.  The Legs held out, even with me climbing a ladder to pick the cherries at the top of the tree.  I cheated, because regular step ladders are hard on The Legs I had an old above ground pool ladder and used that instead.  The steps were wider, and the entire structure was much more stable  - plus I had the pool ladder platform to hold my cherry picking bowls!

I love pie cherries - one of my best memories of my childhood is sitting high in our cherry tree during the summer, eating fresh picked cherries while reading a book.  Living in southern Missouri there are plenty of orchards, but none that I have found with pie cherries.  I think it is too warm down here for cherry trees to thrive - they like cold weather in the winter.  Mine haven't done so well in the past but this was a good year for cherry trees I guess.

Mom decided she wanted to make cherry preserves or cherry jam, so today I bought sugar and pectin and we made several pints of cherry jam.  Now making jellies or jams is a fairly expensive proposition - it is probably cheaper to buy ready made products at the grocery store - but nothing tastes better than homemade cherry jam!  I still have more to make, but will make it tomorrow night - wore out tonight before the cherry supply was used.

What's the difference between a jelly and a jam?  Jelly is made just from the processed juice of the fruit, while jam has parts of the fruit and pulp in it.  A preserve has whole fruit in it as opposed to the more chopped up mishmash used in jam.

I survived the weekend without The Headache, The Belly, or The Legs ruining it all for me.  The Hives were behaving, but I re-challenged my system with Flexeril again this evening so I'm a bit hivey at the moment.  Pretty sure Flexeril is now off the preferred drug list for me!

I go tomorrow for my physical therapy eval, Tuesday I go for a day trip to a client, and Thursday I try out the new headache doc to see if this practice will be a match for me.  We also have clients from out of town in the office all week, so it looks to be a busy week!

My Yard is in Flower

But my Hives have no Bees

Started hiving today.  Not sure why, but I suspect it is the shot of prednisolone wearing off creating a backlash of hives.  I do that every so often when taking steroids. The nerve pain in my legs and torso was very bad this weekend, and very bad this morning, but a little better this evening because I have sorta just sat around.  Another call in to my PCP to see what next.

The Headache is trying to interfere with this week's work, but I have managed to back that sucker off by changing the stimulator settings.  I am going to have to go back to Cleveland sometime soon to pick up my electronic headache diary again to finish the headache study but haven't heard from them yet.  One of those days at work where I spun my wheels.  Did several productive things, but felt it made no difference.

My boss, The Big Man, is on the road again this week to another prospect.  He's been in super sales mode, and I'm so glad for him and the company, but my body just is not going to be able to keep up.  Wishing I could trade up for a newer model!  It's so frustrating - we are having one of our best years yet as a business and I'm coming up short when I want so much to be pushing forward with all I have.  The new trainer is working out great - she is fantastic!  So I am very much pleased with that.

My cherry trees are blooming, as are the forsythias and my persian lilacs.  This is the first year my wysteria has blossomed so Woo Hoo!!  The yard smells wonderful with all the flowers. A wild turkey went across the backside of the place this weekend and through the neighbor's yard.  The meadow out back is green and shady and it looks like the glade where the deer bed down is doing fine.  We have a pileated woodpecker family back in the woods, but they are pretty shy so no pictures yet.

Going to go to bed pretty soon, after taking quite a bit of benedryl.  Itching all over and hiving.  Just call me Mr. Bumpy or I guess that's Ms. Bumpy to be politically correct.